Lichen Sclerosus :: Clitoral Fusion Narrowing Of The Vaginal Opening - Remedies?
Jun 6, 2016
I have been diagnosed with lichen sclerosus in addition to vulvodynia. My main symptoms are clitoral fusion and narrowing of the vaginal opening. For some reason I haven't been able to find a steroid cream that I could use that doesn't cause me a horrible vulvodynia flare (feels like my entire pelvis goes into spasm) and was wondering if anyone had alternatives they use that have helped with this symptom.
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Wondering whether it would be proactive to regularly dilate this opening (even with warm oily fingers). I've been abstaining from sex for a year – too painful. Silly me, I've been using a magnifying shaving mirror to inspect my undercarriage nightly and last night it occurred to me to look with a regular mirror. Whoa! I'm a lot narrower than I thought! About two fingers. What I've been noticing in my inspections has been the narrowing and elongation of my perineum. I took that to be a tightening of the flesh from repeated tearing. But now I see it's that the 'shore' of the perineum is sneaking up on the vagina. Like a beach getting wider as the lake's water level drops.
My goal (a modest one) is to always be able to pee. So I think I might make a practice of massaging – slightly stretching that circle every night when applying my oily stuff. Not at the same time as applying Dermovate/clobetasol.
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When I received my diagnosis a month or so ago, I spent a lot of time reading this forum and learned an overwhelming amount of information. One post that stood out was someone who had managed to somewhat reverse their fusion with a baking soda spray treatment. I can't find that post, or remember what thread it was posted on, and I'm hoping someone can point me in the right direction. If there is anyone else who has managed to reverse their fusion.
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I am 33 years old and have just been diagnosed with LS. I also have been diagnosed with vitiligo. I really have no symptoms other than loss of color and a little bit of fusing of my minora to majora. The doctor prescribed me Clobetasol to use twice a day and then he said we will monitor it and eventually use it twice a week. Since I have not experienced pain with sex and my opening is good he told me to continue having sex. I have really read nothing but horror stories online. The doctor made it out like I will use this cream and it should control the LS. I know this a life long diagnosis and there is no cure. My question is...will my LS progress even with treatment? Plus, what is a flare up?
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We are raw, irritated, red, have tears, hurt, sore, itch, and have white patches. We also have fusion and disappearance of some of our parts. Just by looking you can see it all happening except the fusing and disappearing parts. It seems adhering occurs when you don't know..it just appears one day. Is it occurring when we itch or when we are raw and irritated? Do the white patches causes the adhering and covering over our parts? Does the fusing happen at the white patches or can it happen anywhere else on the vulva where we don't have redness, white patches or itching ? Then do we use it all over the vulva when we are free of flare-ups and using steroid once week? When we are free of a flare-up where to we use the cream? Do we use it where we had the irritation ? Do we use it where the scars are and the fusing is even though we are flare free? I read we use the steroid to prevent further scarring and fusion, but I'm still not sure if the fusion is the result of the other symptoms and when we do maintenance with the steroid where do we put it?
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I've had vaginal itching for around two years now, as with most posts I've read I've been told it's just thrush but then I've been tested for that twice now and both tests came back negative. The GUM clinic said it could just be an allergy or thrush of the vulva (if that is even possible?). I have no discharge, other than the normal. It's red near the labia but not exactly bright red. I have small spots but I've googled those before (I can't remember what they're called but they're normal- so google tells me anyway) and whenever I've had an examination then I've been told it looks normal and healthy.
The GUM clinic gave me some thrush cream that also had steriod cream in it and I used that for about six weeks and since then the itching has been much improved. I think it seems to get worse with stress. I don't have any lumps or any white marks or anything which people seem to say are symptoms of Lichen Sclerosus. The fact that it went away with the steroid cream would suggest it's some sort of allergy but I just don't know what to? I have noticed that if I wear no knickers (under a long skirt) then there is hardly any itching at all.
I am currently going through a panic of health anxiety so I can't stop googling these symptoms and it all seems to leads to some sort of cancer so I'm petrified it could be that.
I'm in the UK and I've booked a doctors appointment for Monday where I will ask to be referred because I've had enough of this now. I just wondered if anyone had any ideas or had been through similar?
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I'm not sure if anyone else experiences this? I tend to find something will work for me down there, then it does not. For example: coconut oil has been quite soothing in the past, lately it just irritates me no end.
I tried Olive Oil but it wasn't that great. The Doctor prescribed Sylk vaginal moisturizer and that can either be Okay or not.
Has anyone else got other 'comforters' for LS? Mine gets sore and stingy as opposed to itchy.
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I feel my vaginal opening is small and tight, which causes pain and difficulty in penetration. I used to do digital penetration and am able to insert two of my fingers together, but it doesn't seem to dilate while penis insertion. What could be a possible treatment? Would dilators work or will I need to undergo a surgery?
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Today I noticed a cluster of small bumps around the bottom of the opening of my vagina, they're kind of red. I am sexually active with my boyfriend and I'm slightly worried he could have given me an std. We have oral sex too though and there's nothing wrong with my mouth.. We have sex a lot so maybe it could just be irritation.. I'm not sure but I'm scared. I have pictures but I'm not sure if I'm allowed to post them.
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Okay so I'm 18, i lost my V card when i was 15 and well i don't know how to put this but for like the past 2 years every time i have intercourse i bleed and have symptoms of UTI like having to pee every 5 seconds and when i do it trickles, and not being able to hold it, i went to the doctor and they tested me for uti and it came back negative. But i figured it could be tearing, what really worries me is when i masturbate, when i masturbate i just use my vibrator on the clit till orgasm, but every time i do i bleed and it's not like i'm on my period bleeding it's more like spotting and its not bright red more like a red with a hint of brown but u can still see its red, and i have short nails so there's no possible way i could have scratched something. I would go to my doctor but that's like a 2 hour drive, and this has happening for about 2 years.
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I've been having intense pain in my clitoral region. I used to think it was because of my frequent use of my vibrator. I have been to the hospital 3+ times and all of the checks have been negative. I had a urine culture done, a bacteria & yeast test and a test for stds. This problem has been occurring for 2+ years and I really need it taken care of but everything I try is not working.
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I am 31 years old single...I have clitorial discharge and it was on and off is it normal?or my hormonal imbalance?
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just been reading some of your comments and diet was mentioned, I try to have a healthy diet , don't eat a lot of spicy foods, I always buy fresh veg and only eat fruit like bananas that don't have much acid in. I must admit to having a sweet tooth and do like sweets and I have noticed more flare ups if I have lots of sugary foods. Try to keep my sweetie intake to a minimum which is hard because I think if you suffer from LS you need the occasional treat to cheer you up.. Maybe my fairly bland diet is helping to keep the LS stable
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My Mother suffers from Lichen Planus, which I know is not exactly the same as Lichen Sclerosus. She has recently found urinating really painful. She has today found a convenient way to make things a bit easier. She fills a sports drinks bottle with warm water, and squirts this against herself when she urinates. It is soothing and also cleanses the area each time. hope this may help some people?
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I was diagnosed last year. I also had an early menopause as a teenager so we are looking into IVF to have a baby. I am struggling to find info on how LS affects pregnancy and birth if we are successful? Also thinking that the steroid cream can't be good for pregnancy?
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I have questions about the clitoris being buried. My first LS breakout was about 7 months ago. Have had a couple less severe ones since. I've gotten tremendous relief and healing with the hydrogen peroxide/saline spray, and Caprylic MCT oil (derived from coconut oil) Didn't even know what the heck it was until I found this forum. Have not been to doctor but will make an appt. Noticing as I examine myself that area that my clitoris may be "disappearing" behind folds. I've been reading on this forum and wonder: does the steroid cream reverse the fusion a bit? Enough to free it again?
I had a friend who had a procedure to "free" her clitoris -- not an LS sufferer, but her architecture was such that it was covered up & couldn't climax with her husband all their married years. She finally did some research and found a doctor who specializes in this, and he said "you're 100% covered up". With a minor procedure, she is now normal down there and able to be satisfied with her partner.
I was just wondering if the steroid cream or perhaps this procedure could restore my clitoral area as well. It's been such a short time and my sex life was very satisfying just months ago! I'm 53, btw.
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I'm going to have a biopsy done in few weeks time. I was advised by the dermatologist to get some metope (sp?) gel and apply it 1/2 hour before the procedure. However, I look at the instructions and you have to put an air tight covering over the area once you've applied the gel - something like cling film I think. But how will that work on my fanjo?
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have any ladies had the CO2 fractional laser for LS? The reason I ask is that my dermatologist has finally given me the name of the laser they have suggested for my treatment as I'm struggling with the steroids/HPV warts cycle. They have suggested having the CO2 fractional laser followed a couple of hours later by PRP treatment. The dermatologist said they see the best results with ladies who have this combination on the same day.
over this last week my left labia minor has disappeared 😟 Completely and I have struggled to keep the itch at bay. Although the white patches have diminished. in the last week I had to use the Betnovate but after a day the itch/pain was so bad and not subsiding, that I used the dermovate, this I think was the only thing that helped with the itch eventually. But as I struggle to use these creams I have to be very careful as they induce warts.
Hence the doctor has suggested I undertake the CO2 laser and PRP combination next week.
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Does that mean that we women are more susceptible to viruses, respiratory infections, etc.? Do most follow a certain diet ?
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Was diagnosed a few weeks back and steroid cream helped loads but tonight I have what can only be described as a tightness to my clit ( sorry tmi) almost like it's being pulled back ...
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I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.
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